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What about prognosis and length of survival?

While the women we interviewed understood that their situation was serious, most realized that their doctors would not be able to predict how successful treatment would be, if their brain mets would return, or how long they would survive.

"I knew it was very bad, but didn‚Äôt ask for specifics," said Barbara.

‚ÄúI did not ask about the specific survival estimates,‚ÄĚ Carol said, ‚ÄúBut I knew things were not good.‚ÄĚ

Jane‚Äôs doctor told her that ‚Äúthe seriousness of my breast cancer had ‚Äėjumped up a notch.‚Äô‚ÄĚ

‚ÄúI knew that my brain was now ‚Äėseeded‚Äô with breast cancer cells,‚ÄĚ Sandy said, ‚ÄúAnd it would depend on how many, the location, and responsiveness to surgery and radiation, plus the presence or absence of peripheral brain damage, that would determine my survival chances.‚ÄĚ

Christina, Esther, Sarah, Jenny and Alicia all said their doctors never discussed prognosis or survival time with them, nor did they ask.

‚ÄúStatistics are just numbers taking a general picture,‚ÄĚ Alicia said by way of explanation. ‚ÄúEach patient will do different (better or worse) or fall within the statistics. I believe I will do better.‚ÄĚ

Jenny‚Äôs response was similar. ‚ÄúI‚Äôm not a big fan of statistics as prognosticators,‚ÄĚ she said. ‚ÄúEvery cancer is different, and I believe I am held in God‚Äôs hands. I also think that the statistics are outdated. They reflect older medicines and treatments, so I just kind of ignore them, even when I know what they are.‚ÄĚ

Patty, who has lived with brain mets for five years, did ask her doctor about length of survival when first diagnosed. ‚ÄúI pushed and the answer was 18 months,‚ÄĚ she said. ‚ÄúBut I was also told that ‚Äėstatistics‚Äô were just lies‚Ä¶‚ÄĚ

‚ÄúWhen my first brain met was diagnosed,‚ÄĚ Claudia said, ‚ÄúMy neurosurgeon told me that he had other patients who had been successfully treated with Gamma Knife radiation ‚Äėsurgery‚Äô multiple times for multiple brain mets over many years, including one patient who had Gamma Knife for new brain tumors every year or two who was still alive and doing well after about 10 years.‚ÄĚ

It has been seven years now since Christine was diagnosed with brain metastases. ‚ÄúFortunately, I found an extremely optimistic radiation oncologist,‚ÄĚ she said. ‚ÄúBefore my Mom passed away from metastatic breast cancer in 1989, she made me promise to live until at least 75. I mentioned this promise to Dr. H. and he replied, ‚ÄėWhy do you want to die so young?‚Äô‚ÄĚ